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Please! Need Advice On My Toddler

wildlife-lover

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wildlife-lover Newbie
wildlife-lover
Posted

Hi all,

Im wondering if anyone has had any of these problems in a toddler with celiac. I have celiac disease. My toddler is 27 months old. Since about 12 months old (and adding food to his diet at 6 mos., breastfeeding breastfeeding until 18 mos) my son has been dropping down the percentage scale for babies his age. He is now in the 3% for weight (weighs 22 lbs) as well as 6% in height. He is also delayed in his motor skills/cognitive skills and is going to have to start speech therapy. He shows no signs of autism. He has always seemed healthy but just small. He did not get any teeth until 13 months old and didn't start walking until almost 17 mos. He also has chronic loose & runny stools. He had been tested for vitamin deficiency which came back normal. His pediatrician said that he does not have celiac as if he did, he would have a lack of vitamins. I was also told that the diarrhea is from the 2 bottles of milk that he gets a day (which we do for extra calories). Does this sound like it could in fact be celiac disease??? Im starting to wonder if I should put him thru the traumatic experience again of having his blood drawn. It would be greatly appreciated if anyone else would let me know if they have had these sypmtoms in a baby/toddler with celiac disease.

Thanks so much,

Melissa, mommy to Ryan

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ptkds Community Regular
ptkds
Posted

You should definetly have him checked for celiac disease. My dd was borderline anemic, but her pedi said her levels were "within normal range", but the WIC office said she was anemic. Or you could just try the diet for a while and see if he improves. It shouldn't be too hard if you are on the diet as well. He may also have a milk allergy or lactose intolerance.

ptkds

OceanGirl78 Newbie
OceanGirl78
Posted

I personally would have him tested. As most people on this board have discovered, many doctors are very uneducated when it comes to celiac disease. They only look for the classic digestive, malnourishment signs - which is just the tip of ONE of the symptom iceburgs out there.

Shortly before I was FINALLY diagnosed (at age 22) I became lactose intolerant - common among many undiagnosed celiacs from what I have read. About 6 months after going gluten-free, I was able to start consuming dairy again and have not had a problem in 6 years.

Good luck!

wildlife-lover Newbie
wildlife-lover
Posted
  • Author

Thanks for some fo the quick responses/advice. It took years of me being sick like a dog with stomach & intestinal problems before I was diagnised. Sadly..... I was the one who finally found a doctor who didn't think I was a HYPOCHONDRIAC and tested me for celia which I had previously begged several doctors to do. I also have an auto-immune disease similar to Lupus. I guess I shouldn't rely on Dr.'s telling me boys don't generally inherit auto-immune diseases from their moms.

Any other info is appreciated as well. My sons only real favorite foods are cheese and pasta. I have been giving him alot of it since it is high calorie/carbs.

Melissa

mftnchn Explorer
mftnchn
Posted

I think your doctor is not knowledgeable enough about celiac. He has classic signs of delayed growth plus the diarrhea. In addition his mother is a diagnosed celiac. The latter alone should point to the need for celiac screening.

Yes the blood draw is traumatic, and yet it could be much easier for you to get respect from doctors if he was clearly diagnosed. On the other hand, the diet is under your control.

wildlife-lover Newbie
wildlife-lover
Posted
  • Author

Hi all,

I am having my sons blood drawn tomorrow. Im not looking forward to it as it took 4 people to hold him down the last time he had blood drawn. It breaks my HEART. At least we will know if he has celiac though. Thanks for the replies. I may be back for some suggestions if his test comes back +.

Kindest regards,

Melissa

NewGFMom Contributor
NewGFMom
Posted

Poor little guy! Just remember 2 minutes of pain and discomfort can bring you a lot of answers in the long run. Hopefully they'll test for the gene and you'll have a pretty definitive 'no' if he doesn't have the gene.

Good luck!

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celiac-mommy Collaborator
celiac-mommy
Posted

If you feel like he should be tested (listen to your heart) then you need to tell your Dr. that he WILL be testing him. If he refuses, you need to find another Dr. I work in health care, I am fortunate that I know by working with these docs who are good and who are not as good, I realize that most people don't have this luxury--for this reason, I tell people that "YOU are in charge of your healthcare as well as being a health advocate for your child. NO ONE knows your body better than you-take charge and make your Dr listen or find a new doc"

Good luck to you and your family :D

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, the blood test is extremely unreliable in children under six and there are many false negatives. The same goes for the biopsy. For children this age the diet is the most reliable test, as well as testing from Enterolab (stool testing, no blood draw involved, less traumatic for everyone except for your wallet :blink: ).

Also, even though 95% of people with celiac disease have the so-called celiac disease genes (and definitely not all of them have been identified), some people have biopsy-proven celiac disease without those genes. So, even if somebody doesn't have the DQ2 or DQ8 genes they can have celiac disease, despite doctors telling you otherwise.

Also, I would stop the milk, as it could definitely be part of the problem. Rather than adding calories, it might be causing the diarrhea, and the same goes for the pasta.

If you want to add healthy calories to his diet, use cold-pressed, non-hydrogenate coconut oil for cooking and baking. It is the healthiest saturated fat on the planet and is even used as a supplement.

Of course, celiac disease is genetic. With those symptoms and you having celiac disease, you really know already that he has it. Personally, I would just bypass that ignorant doctor and go for Open Original Shared Link testing myself, if I was his mother.

wildlife-lover Newbie
wildlife-lover
Posted
  • Author
Unfortunately, the blood test is extremely unreliable in children under six and there are many false negatives. The same goes for the biopsy. For children this age the diet is the most reliable test, as well as testing from Enterolab (stool testing, no blood draw involved, less traumatic for everyone except for your wallet :blink: ).

Also, even though 95% of people with celiac disease have the so-called celiac disease genes (and definitely not all of them have been identified), some people have biopsy-proven celiac disease without those genes. So, even if somebody doesn't have the DQ2 or DQ8 genes they can have celiac disease, despite doctors telling you otherwise.

Also, I would stop the milk, as it could definitely be part of the problem. Rather than adding calories, it might be causing the diarrhea, and the same goes for the pasta.

If you want to add healthy calories to his diet, use cold-pressed, non-hydrogenate coconut oil for cooking and baking. It is the healthiest saturated fat on the planet and is even used as a supplement.

Of course, celiac disease is genetic. With those symptoms and you having celiac disease, you really know already that he has it. Personally, I would just bypass that ignorant doctor and go for Open Original Shared Link testing myself, if I was his mother.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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